Assessing disability in children and youngsters in South Sudan
CEO-BC Global South Sudan
Overview
Decades of conflict in South Sudan, pre and post-independence in 2011, poverty and access to services have increased the rate of disability and rendered children and youngsters with disabilities more marginalized and excluded as a result of the numerous attitudinal, environmental, and institutional barriers they face, and the lack of concerted efforts to include them. This article is to examine the evidences on the experiences of children and youngsters with disabilities living in South Sudan. There are numerous gaps in respect to the experiences of children and youngsters with disabilities living in South Sudan as very little study has looked at disability in South Sudan and the available evidence base is extremely limited.
According to a national census conducted in 2008, before the 2011 independence of South Sudan, persons with disabilities accounted for 5.1% of the population, although the census is controversial and the number of disabled people believed to be an underestimate (Legge, 2016, p.1; Anyang, 2016, p.4; Sida, 2014, p.1). This is due to both issues with how disability was defined and the likelihood that stigma prevented people from identifying themselves as being a person with disabilities (Legge, 2016, p.1).
The Challenges Affecting Children and Youngsters with Disabilities in South Sudan
Disability is often stigmatized in South Sudan and as a result children and youngsters with disabilities are hidden and isolated. These negative attitudes contribute to discrimination against people with disabilities in South Sudan. Organizations implementing projects relating to Community Based Rehabilitation (CBR) are reported to have helped to change attitudes towards disability in some communities. Adults and children with disabilities in South Sudan have been subject to various forms of verbal, physical and sexual abuse by their families and the wider community.
Children with disabilities face many barriers to inclusion including a lack of specialized services; difficulties accessing mainstream education, health and other services; and stigma. Traditional gender roles limit women and girls with disabilities access to education and employment making them more vulnerable and dependent. Women with disabilities also experience higher levels of physical, psychological and sexual violence.
Children with disabilities have very limited access to any educational opportunities, especially outside Juba, and if they are girls or if they have intellectual, psychosocial and multiple impairments. Barriers to education for children with disabilities include the schools location and accessibility, negative attitudes and lack of teacher experience. Efforts are being made by the government and other actors to foster inclusive education.
Poor transport infrastructure and the cost of transport make it harder for people with disabilities to access services. Service and social infrastructure and communications are often inaccessible, contributing to the social exclusion of people with disabilities.
People with disabilities struggle to access and afford healthcare, including assistive devices, and are among those most vulnerable to malnutrition. South Sudan has critical levels of mental health issues as a result of the conflict but mental health services are extremely limited and people with mental health conditions have been locked in prison even if they haven’t committed a crime.
Most people with disabilities are unemployed and there are almost no social safety nets and food security schemes for persons with disabilities. Barriers to employment include the accessibility of the working environment and the attitudes of employers and colleagues.
People with disabilities face greater risks of being caught in fighting and have been left behind when communities have fled attacks. Numerous abuses against them have been documented. Conflict also increased the severity of disability by preventing people with disabilities accessing services and medicines they need.
People with disabilities have limited access to humanitarian assistance, especially if they are not in protection of civilian sites, although a lot of the mainstream support provided in these camps is also inaccessible.
Causes of impairments
Armed
conflict, poverty and lack of health services contribute to increased numbers
of persons with disability (Sida, 2014, p. 1). The current civil war and South
Sudan’s previous history of conflict have ‘caused disabilities among large
numbers of civilians, with maiming and amputations, damaged or destroyed sight
and hearing, or other impairments’ (HRW, 2017; Forcier et al, 2016, p. 4; CARE,
2016, p. 15). Treacherous conditions in the bushes or swamps as people flee to
safety have led to injuries or diseases leading to disabilities (HRW, 2017;
Forcier et al, 2016, p. 12). Ayazi et al (2013, p. 10) found that disabled
participants in their study had a significantly higher rate of exposure to
traumatic events compared to nondisabled individuals.
The large number of South Sudanese with disabilities as a result of the conflict is further exacerbated by disease and accidents (Forcier et al, 2016, p. 4; MoGCSWHADM, 2013, p. 6). ‘Chronic underdevelopment and lack of medical services have contributed to the emergence of physical and sensory disabilities linked to preventable or untreated conditions, such as polio, tuberculosis, cataracts, or other tropical diseases’ (HRW, 2017). Complications during pregnancy and childbirth have also contributed to increasing numbers of impairments (Forcier et al, 2016, p. 5; UNICEF, 2015, p. 66; GoSS, 2015, p. 21 Sida, 2014, p. 1).
A partial National Disability Assessment in 2012 carried out on behalf of the government found that that the main self-reported causes of impairment among the surveyed population with severe disability were: eye disease (23.5%), war/conflict (21%), poliomyelitis (21%), mental illness (14.1%), acquired at birth (12.2%), road accident (10.6%), animal/snake bite (10%), physical violence and abuse (8.8%), burns (6.7%), hypertension (3.8%) and HIV/AIDS (0.9%) (MoEST, 2014, p. 21; MoGCSWHADM, 2013, p. 9).
People with disabilities in South Sudan face significant social and political exclusion and are among the most marginalised in society (Forcier et al, 2016, p. 4; Legge, 2017, p. 1). Awareness of disability issues among key decision makers and the public is low, negative social attitudes and structural discrimination prevail, and people with disabilities have limited access to essential services and employment (Forcier et al, 2016, p. 5; CARE, 2016, p. 15; Rieser, 2014, p. 3; MoGCSWHADM, 2013, p. 6; MoGCSWHADM, 2013, p. 18). They are more likely to be illiterate, unemployed and unproductive than their peers without disabilities due to widespread exclusion (Legge, 2016, p. 1).
South Sudanese authorities have had limited capacity to respond to the medical, educational and mobility needs of people with disabilities, both before and after the country’s independence in 2011, and there has been little pressure on them to respond to their needs (HRW, 2017; Forcier et al, 2016, p. 20; McNeish, 2013). Research found that ‘the majority of local authority and services providers expressed a lack of knowledge and experience to provide services and enable equal participation of people with disabilities’ (Rieser, 2014, p. 3; MoGCSWHADM, 2013, p. 9). A number of international and national organisations provide some services and support for services, including health and rehabilitation, inclusive education and livelihoods, although this is not enough to meet the immediate and long term needs of people with disabilities, especially as a result in the increase in need due to the conflict (Forcier et al, 2016, p. 14, 16, 20; McNeish, 2013).
People with disabilities are generally invisible in development programming in South Sudan and are not considered part of the target population which has had a negative impact on the quality of life and participation of persons with disabilities, their families, and the socio-economic development of South Sudan (Rieser, 2014, p. 3; MoGCSWHADM, 2013, p. 9).
Further readings
AI. (2016). “Our Heats have gone dark” – the mental health impact of South Sudan’s conflict. Amnesty International. https://www.amnestyusa.org/files/southsudan_mental_health_report.pdf Anyang, M. (2016). Presentation by the Education Secretary of South Sudan Association of the Visually Impaired. https://worldinstituteondisabilityblog.files.wordpress.com/2016/11/mauotspresentation.pdf Ayazi, T., Lien, L., Eide, A.H., Jenkins, R., Albino, R.A., & Hauff, E. (2013). Disability associated with exposure to traumatic events: results from a cross-sectional community survey in South Sudan. BMC Public Health 13:469. http://www.biomedcentral.com/1471- 2458/13/469 CARE. (2016). Inequality and Injustice: the deteriorating situation for women and girls South Sudan’s war – A Progressive Gender Analysis: 2013 – 2016. CARE. http://insights.careinternational.org.uk/media/k2/attachments/CARE_Inequality-andinjustice_South-Sudan-progressive-gender-analysis_Dec-2016.pdf Faehnders, M. (2018). Fighting for inclusion. SEN Magazine. https://senmagazine.co.uk/home/articles/senarticles-2/fighting-for-inclusion.
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